Palliative care for homeless people: a systematic review of the concerns, care needs and preferences, and the barriers and facilitators for providing palliative care.
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ABSTRACT: Homeless people often suffer from complex and chronic comorbidities, have high rates of morbidity and die at much younger ages than the general population. Due to a complex combination of physical, psychosocial and addiction problems at the end of life, they often have limited access to palliative care. Both the homeless and healthcare providers experience a lot of barriers. Therefore, providing palliative care that fits the needs and concerns of the homeless is a challenge to healthcare providers. This systematic review aims to summarize evidence about the concerns, palliative care needs and preferences of homeless people, as well as barriers and facilitators for delivering high quality palliative care.PubMed, Embase, PsycINFO, CINAHL and Web of Science were searched up to 10 May 2016. Included were studies about homeless people with a short life expectancy, their palliative care needs and the palliative care provided, that were conducted in Western countries. Data were independently extracted by two researchers using a predefined extraction form. Quality was assessed using a Critical Appraisal instrument. The systematic literature review was based on the PRISMA statement.Twenty-seven publications from 23 different studies met the inclusion criteria; 15 studies were qualitative and eight were quantitative. Concerns of the homeless often related to end-of-life care not being a priority, drug dependence hindering adequate care, limited insight into their condition and little support from family and relatives. Barriers and facilitators often concerned the attitude of healthcare professionals towards homeless people. A respectful approach and respect for dignity proved to be important in good quality palliative care.A patient-centred, flexible and low-threshold approach embodying awareness of the concerns of homeless people is needed so that appropriate palliative care can be provided timely. Training, education and experience of professionals can help to accomplish this.
Palliative care for homeless people: a systematic review of the concerns, care needs and preferences, and the barriers and facilitators for providing palliative care.
<h4>Background</h4>Homeless people often suffer from complex and chronic comorbidities, have high rates of morbidity and die at much younger ages than the general population. Due to a complex combination of physical, psychosocial and addiction problems at the end of life, they often have limited access to palliative care. Both the homeless and healthcare providers experience a lot of barriers. Therefore, providing palliative care that fits the needs and concerns of the homeless is a challenge to ...[more]
Project description:BackgroundDementia has become a major public health issue worldwide due to its rapidly increasing prevalence and an increasing number of dementia-related deaths in long-term care facilities. The aim of this study was to examine health professionals' experiences of potential barriers and facilitators in providing palliative care for people with severe dementia in long-term care facilities.MethodsThis was a qualitative descriptive study. The data were collected from four focus groups and 20 individual in-depth interviews with healthcare professionals from four Norwegian nursing homes. The data were analysed by thematic text analysis, as described by Braun and Clarke.ResultsThe major findings indicate that healthcare professionals experience a lack of continuity as the main barrier to facilitating palliative care. Time pressure and increased efficiency requirements especially affect the weakest and bedridden residents with dementia. The healthcare professionals feel conflicted between wanting to spend more time caring for each individual resident and feeling pressure to help everyone. Although resources are scarce, dying residents are always given priority by healthcare professionals, either by the hiring of extra personnel or the reorganization of tasks in a way that facilitates someone staying with the terminal resident. Advanced care planning was highlighted as a facilitator in providing palliative care, but the extensive use of temporary staff among nurses and doctors and the relocation between the sheltered and long-term wards threaten the continuity in planning and providing palliative care.ConclusionsThe findings indicate that healthcare professionals experienced several structural barriers that prevented the provision of palliative care to people with severe dementia in long-term care facilities. Increasing demands for economic rationality lead to a lack of continuity of care. Organizational changes, such as measures to increase the competence and the proportion of permanent employees and the prevention of burdensome end-of-life transitions, should be implemented to improve continuity and quality of care.
Project description:BACKGROUNDOver the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, implementing a PPCT into an organisation is a challenge. The objective of this study was to identify barriers and facilitators reported by healthcare professionals (HCPs) in primary, secondary or tertiary care for implementing a newly initiated multidisciplinary PPCT to bridge the gap between hospital and home.METHODSThe Measurement Instrument for Determinants of Innovations (MIDI) was used to assess responses of 71 HCPs providing PPC to one or more of the 129 children included in a pilot study of a PPCT based at a university children's hospital. The MIDI (29 items) assessed barriers and facilitators to implementing the PPCT by using a 5-point scale (completely disagree to completely agree) and additional open-ended questions. Items to which ?20% of participants responded with 'totally disagree/disagree' and ?80% responded with 'agree/totally agree' were considered as barriers and facilitators, respectively. A general inductive approach was used for open-ended questions.RESULTSReported barriers to implementing a PPCT were related to the HCP's own organisation (e.g., no working arrangements related to use of the intervention [PPCT] registered, other organisational changes such as merger going on). Reported facilitators were mainly related to the intervention (correctness, simplicity, observability and relevancy) and the user scale (positive outcome expectations, patient satisfaction) and only once to the organisation scale (information accessibility). Additionally, HCPs expressed the need for clarity about tasks of the PPCT and reported having made a transition from feeling threatened by the PPCT to satisfaction about the PPCT.CONCLUSIONPositive experiences with the PPCT are a major facilitator for implementing a PPCT. Tailored organisational strategies such as working arrangements by management, concrete information about the PPCT itself and the type of support provided by the PPCT should be clearly communicated to involved HCPs to increase awareness about benefits of the PPCT and ensure a successful implementation. New PPCTs need protection and resources in their initial year to develop into experienced and qualified PPCTs.
Project description:BACKGROUND:Hepatitis C virus (HCV) is highly prevalent among homeless persons, yet barriers continue to impede HCV testing and treatment in this population. We studied the experiences of homeless individuals related to accessing HCV care to inform the design of a shelter-based HCV prevention and treatment program. METHODS:Homeless shelter clients (10 women and 10 men) of a large shelter in San Francisco participated in gender segregated focus groups. Focus groups followed a semi-structured interview format, which assessed individual, program/system, and societal-level barriers and facilitators to universal HCV testing and linkage to HCV care. Focus group interviews were transcribed, coded, and analyzed using thematic analysis. RESULTS:We identified key barriers to HCV testing and treatment at the individual level (limited knowledge and misconceptions about HCV infection, mistrust of health care providers, co-morbid conditions of substance use, psychiatric and chronic medical conditions), system level (limited advocacy for HCV services by shelter staff), and social level (stigma of homelessness). Individual, system, and social facilitators to HCV care described by participants included internal motivation, financial incentives, prior experiences with rapid HCV testing, and availability of affordable direct acting antiviral (DAA) treatment, respectively. CONCLUSIONS:Interrelated individual- and social-level factors were the predominant barriers affecting homeless persons' decisions to engage in HCV prevention and treatment. Integrated models of care for homeless persons at risk for or living with HCV address many of these factors, and should include interventions to improve patient knowledge of HCV and the availability of effective treatments.
Project description:BackgroundCommunity pharmacies are easily accessible for self-care advice. Guidelines for providing self-care advice were introduced in several countries, including the Netherlands in the 1990s. Previous studies have indicated room for improvement in self-care advice in daily pharmacy practice.AimTo identify barriers and facilitators for providing self-care advice.MethodSemi-structured interviews were conducted face-to-face or online with pharmacists and pharmacy assistants using a topic guide based on the Theoretical Domains Framework. The interviews were audio-recorded and transcribed verbatim. The transcripts were deductively analysed to identify barriers and facilitators for self-care counselling. COREQ guidelines were followed.ResultsIn total, 13 pharmacists and 12 pharmacy assistants were interviewed to reach data saturation. In general, most themes addressed by pharmacists and pharmacy assistants belonged to similar domains. The following domains were frequently mentioned: environmental context and resources (e.g. priority for prescription drugs, privacy, collaboration with general practitioners, access to patients' records), intentions (providing reliable advice), skills (communication, decision-making), knowledge (ready guideline knowledge), beliefs about consequences (patient safety), social influences (patient awareness of pharmacist role), reinforcement (lack of reimbursement for relatively time-consuming advice).ConclusionThis study identifies barriers and facilitators for evidence-based self-care advice. Pharmacists should first support pharmacy assistants by helping them keep their knowledge and skills up to date and creating suitable pharmacy preconditions to facilitate improvements in self-care counselling. Second, collaboration with general practitioners regarding minor ailments should be improved.
Project description:Palliative care has potential to improve quality of life and goal-concordant care for patients with adult congenital heart disease (ACHD). However, it is rarely employed prior to critical illness because the best methods for implementation are not well-defined. We qualitatively evaluated ACHD patients' understanding of and opinions regarding palliative care and advance care planning (ACP) to better define the needs of this population. We conducted a thematic analysis of 25 semistructured interviews with patients with ACHD in which we assessed participants' perspectives on the need for, and barriers and facilitators to, the use of palliative care and ACP. In a group of participants with ACHD (mean age 38, 48% male) classified as simple (24%), moderate (32%), or complex (44%), we identified 4 major themes: (1) using knowledge to combat future uncertainties; (2) unfamiliarity with and limited exposure to palliative care and ACP; (3) facilitators and barriers to engaging in palliative care and ACP; and (4) importance of timing and presentation of ACP discussions. In conclusion, participants expressed a desire for knowledge about ACHD progression and treatment. They supported routine incorporation of palliative care and ACP and identified related facilitators and barriers to doing so. Importantly, timing and format of these discussions must be individualized using shared decision-making between clinicians, patients, and their families.
Project description:Neonatal nurses in mainland China encounter various challenges when it comes to delivering palliative care to neonates. The aim of this study was to determine the barriers and facilitators of neonatal nurses' attitudes to palliative care for neonates in mainland China. A simplified Chinese version of the Neonatal Palliative Care Attitude Scale was piloted, administered, and analyzed using survey methods. Nurses in neonatal intensive care units in mainland China regardless of experience in the field were invited to take part in. Over a five-month period in 2019, we surveyed neonatal nurses from 40 hospitals in five provinces of China. The response rate was 92.5% (N = 550). This study identified eight facilitators and four barriers to neonatal palliative care implementation. In terms of nurses' attitudes on providing palliative care, younger and older nurses were more positive, whereas middle-aged nurses were less so. Nurses' emotional wellbeing was rarely impacted by neonatal death. They considered neonatal palliative care, particularly pain management, to be just as important as curative treatment. Parents were invited to participate in decision-making by nurses. Nurses reported having access to professional counseling and talking about their concerns with other healthcare professionals. The following barriers to neonatal palliative care were identified in this study that were not observed in the original English version scale research in 2009: a lack of clinicians, time, clinical skills, systematic education, neonatal palliative care experience, and social acceptance. Future research is required to investigate each barrier in order to improve the implementation of neonatal palliative care in mainland China.
Project description:BackgroundPediatric patients experience significant symptoms during cancer treatment. Symptom management is frequently inadequate. We studied perceptions of pediatric oncology care providers regarding early integration of palliative care (PC) for pediatric patients to identify barriers and facilitators that might assist in understanding how care could be improved.ProceduresPediatric oncology providers were recruited to participate in four focus groups. A proposal for early integration of a pediatric palliative care team (PPCT) was presented and followed by a facilitated discussion. Data were analytically categorized into themes by three independent coders using constant comparative analysis and crystallization techniques. A consensus approach was used to identify final themes.ResultsBarriers to the proposed care model of early integration of a PPCT included provider role, conflicting philosophy, patient readiness, and emotional influence and were more prevalent in the physician participants compared to nurse practitioner, nursing, and social work participants. Facilitators included patient eligibility, improved patient care, education, and evidence-based medicine. Though all participants were invested in providing optimal patient care, physician participants believed the current standard of care model is meeting the needs of patients and family, while the nurse practitioner, nursing, and social work participants working on the same healthcare team believed the proposed care model would improve the overall care of children diagnosed with cancer.ConclusionsDiffering perceptions among healthcare providers regarding the care of children with cancer suggest that team functioning could be improved. Avenues for pilot testing early integration of PC could provide useful information for a next study.
Project description:BackgroundIn the UK, general practitioners (GPs) are the most commonly used providers of care for emotional concerns.ObjectiveTo update and synthesize literature on barriers and facilitators to GP-patient communication about emotional concerns in UK primary care.DesignSystematic review and qualitative synthesis.MethodWe conducted a systematic search on MEDLINE (OvidSP), PsycInfo and EMBASE, supplemented by citation chasing. Eligible papers focused on how GPs and adult patients in the UK communicated about emotional concerns. Results were synthesized using thematic analysis.ResultsAcross 30 studies involving 342 GPs and 720 patients, four themes relating to barriers were: (i) emotional concerns are difficult to disclose; (ii) tension between understanding emotional concerns as a medical condition or arising from social stressors; (iii) unspoken assumptions about agency resulting in too little or too much involvement in decisions and (iv) providing limited care driven by little time. Three facilitative themes were: (v) a human connection improves identification of emotional concerns and is therapeutic; (vi) exploring, explaining and negotiating a shared understanding or guiding patients towards new understandings and (vii) upfront information provision and involvement manages expectations about recovery and improves engagement in treatment.ConclusionThe findings suggest that treatment guidelines should acknowledge: the therapeutic value of a positive GP-patient relationship; that diagnosis is a two-way negotiated process rather than an activity strictly in the doctor's domain of expertise; and the value of exploring and shaping new understandings about patients' emotional concerns and their management.
Project description:IntroductionInterventions that modify the built environment can increase population physical activity levels and prevent chronic disease. The national Cooperative Extension System is poised to implement built environment approaches (i.e., pedestrian/bicycle infrastructure and enhanced access to physical activity spaces), but implementation strategies (i.e., methods or techniques to move research to practice) are needed to improve uptake. Effective implementation strategies address relevant barriers and capitalize on facilitators. The purpose of this study was to understand 1) barriers and facilitators to implementing built environment approaches in two state Extension systems, 2) preferences for built environment approaches, and 3) preferences for implementation strategies.MethodsA cross-sectional online survey was used to understand Extension personnel's preferences for and barriers and facilitators to built environment approaches through a mixed-methods study design. This work was informed by anthropological inquiry as the overall research philosophy, and by the Health Impact Pyramid, Leeman et al.'s classification of implementation strategies, and the Consolidated Framework for Implementation Research as the theoretical frameworks. The survey was distributed to eligible Extension personnel (n = 42) in two states. Quantitative data analysis consisted of numbers/proportions and Friedman tests. Qualitative analysis was completed through a rapid deductive approach to quickly produce actionable results.ResultsFourteen respondents (33%) completed the survey. Most had not implemented physical activity interventions in their communities or had implemented only individual-level interventions, though were interested in implementing built environment approaches. Benches, playground improvements, and crosswalks were the most desired approaches, while facilitation, assessing community strengths and needs, and technical assistance were desired implementation strategies. The most common barriers were relative priority and available resources; facilitators were external policy and incentives and implementation climate.DiscussionExtension personnel are receptive to built environment approaches and engaged with community coalitions. Yet, invested parties prefer individual-level interventions, and agents perceive a lack of resources for implementation. Implementation strategies that build capacity in both the Extension system and community coalitions may address these barriers through increasing relative priority and sharing existing resources. This work is a first step toward compiling implementation strategies to address relevant barriers to built environment approaches in community settings.
Project description:Although numerous studies have been conducted previously on the needs of cancer patients at the end of their life, there is a lack of studies focused on older patients with non-oncological complex chronic multipathologies. Examining these needs would help to gain a greater understanding of the profile of this specific population within the palliative care (PC) pathway and how the health and care systems can address them. The aim of this review was to identify the needs influencing PC among older patients with multimorbidities, their relatives or informal caregivers, and the health professionals who provide care for these patients. A scoping literature review guided by the Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist was carried out with literature searched in the Medline, Embase, CINAHL, WoS, Cochrane Library, PsycINFO, and Scopus databases from 2009 to 2022. Eighty-one studies were included, demonstrating a great variety of unaddressed needs for PC among chronic older patients and the complexity in detecting those needs and how to refer them to PC pathways. This review also suggested a scarcity of tools and limited pathways for professionals to satisfy their needs for these patients and their families, who often felt ignored by the system. Substantial changes will be needed in health and care systems at the institutional level, providing more specialized PC environments and systematizing PC processes.
